Full Speed Ahead

It was a beautiful morning in May 1995 when I phoned my father and told him I was going for a run. My heart was pounding as I laced up my sneakers and walked out of my apartment in Haverhill, Massachusetts. I was scared. I was twenty-nine years old and had never been out for a run.

I was born with cystic fibrosis (CF), a disease that clogs the lungs with thick mucus and inhibits the body from absorbing nutritional fat, As a child, I was the smallest one on the block.  I always had to stop to catch my breath while the other kids raced around.  In middle school, I'd get dressed for gym and then sit on the curb while the rest of the class sprinted up a steep hill.  That's when I began to dream of one day I would run like everyone else.  It was a fanciful notion--at that time half of all the CF patients died before they were nineteen (today it's thirty-two)--but I had always believed that somehow things would work out for me.

   I was never acutely ill as a young child.  As a teenager, however, I was hospitalized twice a year for "clean-outs," which lasted for ten days to two   weeks. During these intense sessions, a physical therapist would pound on my chest a few times a day to

loosen the mucus in my lungs, and I would receive intravenous antibiotic treatments.  My disease tethered me home, with my medication and nebulizer--a misting machine that opens the airways--and daily visits from a physical therapist to pound on my chest.  After I graduated high school in 1985, I studied fashion design and merchandising at a nearby junior college.  When I was hospitalized, I'd still go classes, wrapping my arm in gauze to cover the intravenous lines and telling my classmates that I burned myself Only my family and close friends knew I had CF.  I rarely told others because I didn't want to be pitied or treated differently.

    For years I'd been friend with another CF patient, Penny Dumont, who was a year older that I am. In October 1998,  the doctor who treated us both called from the hospital and said I better come quick-- Penny wasdying.  I sped to Massachusetts General Hospital, in Boston.  I was holding her hand when Penny died that same day, a week after her Twenty-second  birthday. I was angry and scared but I promised her I'd fight CF.

    By the time I graduated from college, I was so sick that I was hospitalized about once a month, couldn't work and was mostly confined to my parents' apartment, where I lived.  My disease limited my parents lives as well.  My father, a foreman at the Haverhill paper mill, turned down promotions to management because he would have to sacrifice job security and medical benefits the union offered.  My mother worked part time so that she could take care of me.

A few weeks later a young man I was dating inspired me to start weight lifting, which relied on muscle strength rather than lung capacity.  I turned our extra bedroom into a home gym, where I'd spend an hour and a half every day  on a workout that should have taken half an hour, interrupted by coughing fits and shortness of breath.  But I felt I was fighting back against the disease.

  In the early 1990's, a woman I knew with CF got one of the first

double-lung transplants performed at Massachusetts General Hospital.  (The first successful double-lung transplant had been done in 1986.)  I began pushing Dr. Kon-taik Khaw, who treated me my whole life, to evaluate me for the surgery. He was reluctant to consider such a radical procedure, but I insisted.  I was tested to see if I was sick enough to qualify yet strong enough to survive.  In May 1992, I received a beeper and a letter saying I was now on the national organ waiting list as part of the Massachusetts General Hospital  Lung Transplant Program.

   For the next two and a half years, I was in the hospital as often as I was out.  Almost every day, I would cough to the point of throwing up.  But I persisted in lifting weight.  I became a fitness addict, watching exercise shows  and subscribing to fitness magazines.

   On October 27,1994, I got a phone call at four A.M. from the head surgeon of the transplant team.  There was a pair of lungs for me.  My parents were somber as we raced to the hospital.

   I was in surgery for twelve hours.  My lungs were far worst

than the doctors had expected

since I appeared to be healthy otherwise, thanks to my workouts and a gain in weight.  I had only a 50 percent chance at surviving the operation, and my heart stopped twice.  To allow my body to rest the doctors put me in a coma after surgery, and I spent nearly two weeks in intensive care.  I came home five weeks after the transplant.

  The powerful drugs that suppress the immune system so the body won't reject foreign organs  had left me vulnerable to sickness.  The first year after my surgery,  I was hospitalized three times with bouts of acute rejection and twice with pneumonia.  Despite my rough recovery,  I never had a problem breathing after the transplant, which was exhilarating.

When I went in for the transplant, I didn't know that my mother had been diagnosed with bone cancer.  My parents wanted to spare me the anguish.  Her  illness was doubly devastating because when I came home, I  had to be so vigilant about avoiding germs that I couldn't even be

 near her.  She often had a called  because her immune system was compromised.  Eventually, as my recovery progressed, I got an apartment across the street.  I spoke to my mother constantly on the phone.  That Christmas instead of celebrating my transplant, I was incredibly sad.  Cancer had spread to her brain.  On March 28, 1995, I held my mother's hand as she died.  I was heartbroken.  But I felt I owed it   to her and Penny to survive.

Soon after that, my condition improved.  I'd started exercising as soon as I got home from the hospital, and I was finally  feeling stronger. I lifted weights and used the treadmill to walk and then, slowly increasing the pace, to jog.  I worked up to a mile and a half on the treadmill, but it was to cold to run outside.  Finally, on that beautiful morning in May, it was time to fulfill my dream of going for a run outside.    

   I walked out of my apartment, and halfway down the block I started to run.  My legs were weak and my chest was heavy, but I wouldn't let myself stop.  I flew through the streets with tears of happiness running down my cheeks.  Rounding a corner two miles from where I lived, I saw my mother's grave in the cemetery.

   I was so upset that my mother had pushed me to live and to succeed, and now she wasn't here to see it.  So I ran to her grave to show her I was okay.  That day was a turning point.  If I could accomplish this, then my new life could truly begin.

   In August 1996, I competed in the National Kidney Foundation's U.S. Transplant Games.  I won a silver medal in the long jump and came in fourth place in the 100-meter race.  I won three medals at the 1998 games, including a silver in the 100-meter race.  I plan to compete in the 2000 games in June.

   I went back to school in September 1996 to study massage.  I wanted to do something related to the human body, but not in a medical setting--I'd had enough of that.  Three days before starting school, I met John Patrick O'Connor, Twenty-eight, and electrical engineer, and we began dating.  We were married last August.

   Now I celebrate two birthdays: the day I was born and the day I got new lungs.  All I know about the donor is that he was a young mountain climber who died of a brain hemorrhage.  So every year on October 27, I climb a mountain near my home, and leave a yellow rose at the top.

   I work at a spa three days a week where I do massage and fitness counseling.  I haven't been hospitalized since the year after my transplant, though I'm still evaluated once a year by my doctor.  I take two dozen pills a day, including antibiotics, vitamins, and antirejection   drugs.  Since it's risky for me to have children--the antirejection drugs could harm a fetus--John and I plan to adopt.

   I sometimes still have chest pain from the surgery and get headaches from the medication, but I've been so lucky.  I go to the gym almost every day and jog three times  a week.  And every time I put on my sneakers and go for a run, it feels like a miracle.